Three to Six to Who the Hell Knows

September 22, 2010

We left later on Friday than we'd planned, as always, heading up to Pennsylvania in the thick of DC rush hour, hitting additional rush hours in Baltimore and Delaware and Philly all the way up, to a degree where the math of "rush HOUR" starts bending the space-time continuum and we basically sat in traffic for five solid hours, until 11 o'clock at night. We arrived at Jason's parents far too late to get over to visit mine, and I admit I was grateful for one last chance to steel my nerves before having to walk in and see my dad, now that we Knew, here in the After, the Suck.

The first thing he said was that he'd read my posts. I'd emailed my mom and all but ordered her not to read them -- I didn't want to make her cry, but I needed to write what I needed to write, and I knew I'd end up with something different if I imagined them in the audience.

She completely ignored me, of course, and then promptly told my dad to read them.

He loved them. He stood there, looking so thin and pale and bruised like a peach, praising my writing to the skies -- vocabulary! prose! flow! everything he spent 30 years trying to coax out of his high school students! At any other time in my life, I would have burst into hot ugly tears because that's all I've ever wanted to do since I was a tiny thing with my crayons: To be a writer and make my dad proud.

On this day, though, I scrunched and contorted my face and felt some warmth juuuust behind my eyeballs, but I still could not cry.

***

Later that day, I watched my mom cry. A lot. I hugged her and patted her back and stared up at random points on the ceiling. I watched my sister cry as she talked about a dream -- a ridiculous, meaningless dream -- where our dad expressed his completely fictional disappointment with her. I watched my mom cry again as my sister and I tried to convince her to hold off on putting the house on the market, as she heard me say the most awful thing out loud, because someone had to.

"Three to six months, Mom," I said as gently as I could. "Three to six MONTHS."

I didn't much like the idea of those three to six months being spent with a sign on the front yard, with strangers marching through the house and eyeballing medical equipment and oxygen tubing and perhaps even him, in bed, because how the hell can he get up and out every time a realtor wanted to stop by? I didn't like the idea of three to six months' worth of stress over low-ball offers and contingencies and inspections and contracts falling through, and then, even if everything works out...a move? To where? To what? How? Look at him. Look at how fast it's already happening.

I felt mean and cold and hard. When it became clear that they were going to ignore our pleading and put the house on the market anyway, I got vaguely irritated and stomped off. But I still did not cry.

***

Even later that same day, Jason and I volunteered to go get some carry-out for everybody. We drove to a restaurant and sat at the bar while we waited for the food and I rehashed everything over and over again. We drove back to my parents' house and I talked and talked and talked, arguing with no one in particular, because Jason had already agreed with me from the beginning but was just allowing me to ramble.

We pulled up to the house and I said it out loud for probably the 12th or 17th or 32nd time: "Three to six MONTHS."

But this time I only made it to the word "six" before I was wailing. I put my head down in my lap and cried and cried and cried.

***

Jason got sick the next day, with some kind of vicious acid reflux episode that wouldn't let him eat or sleep for rest of our visit. He still had a work-related obligation on Monday night involving a cocktail party and a baseball game at the Phillies' stadium. We went even though we both felt miserable, trying our best to put on a happy face. My mom had asked me to get my dad a blue Phillies shirt while we were there -- which required a Lord-of-the-Rings style quest to find, despite the fact that every other fan in the stadium seemed to be wearing one.

Once we found the elusive blue shirt, I bought myself a Phillies hat to replace the one I lost when we moved.

***

Yesterday -- the day we were planning to leave -- my dad had a doctor's appointment. The magical call from the lab never happened on Friday -- it turned out that in my parents' shock they had completely misheard the doctor and the full pathology results would take several days longer than that.

My mom called me from the office parking lot, shrieking at the top of her lungs.

"IT'S GOOD NEWS IT'S GOOD NEWS IT'S GOOD NEWS!"

She was beyond hysterical and I started shouting over her, begging her to get on with it and tell me. I felt my feet going numb. What good news could there possibly be? Was the doctor completely wrong? How could he be wrong? And if so, then what the hell is wrong with my dad?

My mom finally calmed down enough to say that the leukemia was not acute, it was chronic, and started rushing to assure me that this made "all the difference in the world" and it "wasn't a death sentence" and the doctor was telling them about how TONS of patients go on to live YEARS with this diagnosis. YEARS. Now, this was just their regular family doctor and they'd need to talk to the hematologist but still, Amy, STILL! Everything is going to be okay! This changed everything! EVERYTHING!

I sensed my mom was waiting for me to scream, to laugh, to give a triumphant whoop. Instead I went weirdly quiet and stared at the ceiling. I told her we'd be over once they got back from the doctor.

Jason started questioning me: How can this be that different? He still can't do chemo. He still can't do a bone marrow transplant. What treatment is there? Did they catch it earlier than they thought? It's still obviously coming on fast, and making him sicker, so...?

I shushed him and sat there for a minute trying to process everything. I felt like I'd been knocked off my axis, like it was Wednesday night all over again, only...worse? I felt...angry?

"What the fuck is wrong with me?" I asked out loud.

How many times did we have to go through this? How many phone calls and car trips and well, THIS? How many times did I have to lose him, to grieve over him? To worry endlessly that The End would not be peaceful and quick, but painful and long? At what point is "more time" not actually better? When was this really and truly going to be over?

"What the FUCK is wrong with me?" I asked again, to no one in particular.

***

Part of what was wrong, thinking back, was that my brain was starting to already remember random Google nuggets I'd read about the chronic diagnosis. It would be one thing if they caught it early, or if he was younger, or if he was otherwise in better shape, health-wise. There would be some additional treatment options, some chance at the disease staying in a holding pattern for a decent length of time, of him BEING one of those "TONS" of patients who live for years.

The doctor had still not told my parents what stage the cancer was actually at. On the way to their house I pulled up a few websites on my phone and quickly cursed my creepy photographic memory. At Stage III or IV, after anemia develops and other internal organs get involved, intensive chemotherapy or a bone marrow transplant are pretty much your only options. My father has been anemic for a few months already. He had to be at least at Stage III.

The doctor told my parents something about getting his platelets and anemia back in check, making it sound -- at least to them, in their amped-up joy -- like fighting advancing leukemia required little more than an iron supplement, tra la la la laaaaa.

The only difference I could really deduce between a chronic and acute diagnosis in my father's particular case was that while it would very likely kill him, it would just take a bit longer to do it. Or maybe it would let the chemo do it instead.

***

Jason had suggested outside that I try my best to keep my mouth shut and let the doctors talk with them, to let them enjoy this reprieve, and to pretend like I didn't know any better and was just as happy as they were. I promised to try.

***

When we arrived at my parents house I felt downright sick with knowledge. My mom came to the door with a huge smile on her face and her arms in the air, repeating her refrain about the GOOD NEWS! GOOD NEWS!

I could see my dad standing in the hallway behind her, clapping his hands.

***

I am a terrible liar.

***

Noah amused himself with my phone during the trip home, completely draining the battery. So I didn't see my mom's text message until a few hours after she sent it.

doc called

aggressive

needs chemo

u were right

***

I am exhausted. I am angry. I need something to hit. Something to throw. Even though I never really believed that the switch in diagnosis meant anything...maybe I did. I know my parents did, which makes the whole farce seem so extra cruel and unfair.

Their house is on the market. After being at peace with the no-chemo route on Monday, he seems to be changing his mind, despite the high risks, in a desperate bid for more time. My mom is terrified of chemo, terrified of no chemo. I would now give anything just to have been wrong about the whole thing.

Comments

Oh, honey. I'm just so damn sorry.

I can only imagine how draining and exhausting this is for your entire family. If I lived closer and wasn't a "creepy internet, never-met-face-to-face" friend, I would totally bring you a crappy casserole because that's what us southern folk do the best during times of trouble.

But in all seriousness, please know that you and your entire family is in my thoughts and prayers. Hang in there.

I've only been reading your blog for a little while, but I wanted to let you know that there are no RIGHT answers to the chemo/no chemo question. All answers are painful when they are directly happening to your loved ones.

Oh, Amy. I am so, so sorry. I wish we could take all the pain that you and your family are feeling and split it among all your blog followers, and Twitter and facebook friends, and all the rest who care about you and your family. I wish we could share the burden somehow.

I'd like to invite cancer to sit and spin on a red hot poker. You are an incredibly brave and fabulous person who will deal with the grief/frustration/(insert current emotion here)in your own way in your own time.

Sending you and your family good thoughts and hoping for a best case scenario.

I'm so so so sorry -- dealing with my father's cancer, interacting with my mom and sister about it and then his eventual death from it was the most difficult time period of my life. In many ways more difficult than the loss of baby at 24 weeks gestation....I feel for you, empathize with you, and wish I could make it all better. Hugs to you....

I'm sorry. My mother-in-law just passed away from pancreatic cancer. She lived five months. With chemo. A chemo that we feel took her away from us long before she died. She was so confused for most of her last few months. The dr never mentioned this confusion that could be brought on by the chemo. In hindsight they would not have chosen treatment. Drs appts, sickness, confusion. It was an awful way for them to spend her last months...again, I'm so sorry. There is no good choice, only the least worst.

I'm so sorry this is happening to your family. My mother died 8 years and 4 months ago after 2 years of fighting colon cancer so I will not give you any bullshit platitudes. It sucks. It will continue to suck. I'm so sorry that it sucks. I wish it didn't suck. Hug him a lot. Take a lot of pictures of him and your boys. Tell him you love him a lot. And know you're not alone but that nobody knows what you're going through or can really sympathize with you.
People do want to help and do wish you well though.
You're also going to be really really angry with people who have 2 healthy parents. You just will.
I'm sorry. So so sorry.

The anniversary of my mother's death from lung cancer was last Friday. I remember being where you are and my heart absolutely aches for you. I am so very sorry you are living this. I am so sorry for your dad and that your wonderful boys won't have the chance to know him well. I am just so sorry.

You are speaking the truth, sister. For all of us facing similar circumstances (right now - today!), your words are just so TRUE. The ups and downs, the relentless confusion, the panic every time you get an incoming text message, the fury at doctors who promise too much... Please know this: you are not alone.

Cancer sucks. Denial, so deeply rooted in those we love, totally sucks. Being the constant bearer of bad news (aka reality) really, really sucks. I'm so with you.

Amy, I'm so sorry for your current and impending loss. I know it is especially hard to have your hopes raised and dashed, over and over again. I wish I could say something that would make it all better.

Oh, Amy, I don't know at all what to say. But I strangely consider you a friend - I made my husband sit through the Moules Frites Throwdown last week because "oooh! oooh! This is Amalah's episode!" But I want you to know I am so, so sad for you. What an already awful rollercoaster. I'll be praying for you to be comforted through it all.

Oh, sweetie. I am so so sorry. My heart goes out to you and your family. All the hugs in the world aren't enough to beat back this hurt, but I'm adding mine to the stack.

Your posts are beating me up, a bit, because they found my dad's cancer about the same time as your dad's leukemia was identified, and we just got the staging yesterday. In our case, it was my mom who held most resolutely to the awful truth that it had to be at least Stage III. I frankly have no idea how to move through this pain. My daughter's only a few months old, and I hate hate hate the thought that she might never get to have memories of her grandpa.

Hi Amy,
I wanted to let you know something that has struck me about your last few entries. I'm not sure whether it's because I don't know you, or if it's because your family's current situation is so surreal - but your writing on the subject makes it seems like it's something that's happening to fictional people in a book.

I mean this as a compliment of the highest order (meaning that you're able to craft your words in very absorbing ways) and also as reassurance that it's not you, this situation IS indeed surreal.

Don't ever think you're supposed to feel one way or another about this; you'll how you feel when you feel it, period, because believe me, the ache will come soon enough. Also, whatever you guys decide -- whether your Pop goes through chemo or decides not to -- it's the right thing.

Don't ever think you're supposed to feel one way or another about this; you'll how you feel when you feel it, period, because believe me, the ache will come soon enough. Also, whatever you guys decide -- whether your Pop goes through chemo or decides not to -- it's the right thing.

So I read your post twice to try and wrap my head around it. And... I totally get it. I completely understand what you're getting at. You love your dad so much, you don't want to see him suffer, but at the same time you want to protect your mom and dad from further suffering. To get a gleam of hope after already coming to grips with the news must be completely devastating. Uggh. Anyway, what I want to say is this. I understand you, and what you're thinking is totally understandable. There is NOTHING wrong with you. And also, I'm thinking of you and your family.

Oh Amalah...I have nothing profound or practical to offer. Only my sincerest well-wishes to you, your parents, and your whole family. It absolutely isn't fair, and I only hope the best for all of you, ridiculously optimistic as that may be. I wish peace for all of you.

I'm sorry Amy. I'm sorry that the good news turned into a wet fart. I'm sorry you're hurting so bad right now. I'm sorry everything just fucking sucks. I'll keep praying and thinking of you and your family. And I am so, so sorry.

Been there, done that. I'm sorry that you're there now. It's best to be educated enough about the disease to help your parents make good choices.

My mother fought cancer for 12 years. Every time it came back I read and read up on the new diagnosis. The last time, I knew it was going to be the last time. I didn't discuss with Mama the new hopeless diagnosis to much, I didn't want to take her hope. Amy, remember that, the only thing they have now is hope, even when you know there isn't much hope. Good luck and your father is lucky to have you. It's easy to see how much you love him.

It was the wee thing with crayons wanting to make your father proud of you that did me in.

Amy, I am so sorry that you are in this hellish roller coaster of loss and I will skip any Hallmark platitudes that can often get hurled at this time and just say that if I were there I would totally be your punching bag.

oh god, i'm so sorry. and yes, of course it's the up and down and back and forward that has broken you. it seems so unfair that even with bad news, the worst news, there is no sure or stability or place to hold onto.

I'm really sorry Amy. I don't comment a lot but I read you all the time... your posts on this have been just heartwrenching and beautiful. No wonder your dad is proud of you.

My husband treats cancer with radiation--he's a medical physicist. One thing I've learned from him is that cancer doesn't discriminate. It's just a fucking relentless bastard of a disease. Don't feel bad about crying/not crying or even if you want this to be over for him sooner than later (I definitely felt that way about my grandpa's prostate cancer). Grief is grief, there is no wrong way to feel.

My thoughts and prayers are with you and your family. Keep going. Your parents are lucky to have you.

I'm so sorry about your dad, and sorry about the total yo-yo of news and emotions that was your time at home. So awful, and I do understand your ambivalence about time and treatment and all of that. I'd like to think I know what I'd choose if I were the one to get a diagnosis, but of course that's a load of crap. You never know until it's staring you in the face, and even then, it's a guess at best.

I'm so sorry about your dad, and sorry about the total yo-yo of news and emotions that was your time at home. So awful, and I do understand your ambivalence about time and treatment and all of that. I'd like to think I know what I'd choose if I were the one to get a diagnosis, but of course that's a load of crap. You never know until it's staring you in the face, and even then, it's a guess at best.

I'm so sorry about your dad, and sorry about the total yo-yo of news and emotions that was your time at home. So awful, and I do understand your ambivalence about time and treatment and all of that. I'd like to think I know what I'd choose if I were the one to get a diagnosis, but of course that's a load of crap. You never know until it's staring you in the face, and even then, it's a guess at best.

Like everyone else has said, I'm so sorry you and your family are going through this. Treat yourself with kindness as much as you can. And you have a legion of followers who will help support you with kindness too.

I am sorry that you and your family have to go through such a difficult time. May you all have peace and comfort, and also things to throw and punch. I know if it were me (and one day, it will be), I'd want both.

FUCK CANCER! My heart hurts for all of you. My heart is filled with hopes and wishes and dreams that somehow you will all make the best of it and find some peace (or something to hit - something SOFT). My heart is crying with you sweetie. Just try to close your eyes and feel all the love and hugs your virtual friends are sending.

I was so struck by your "How many times?" question...too damn many, I know. But I'm also struck by how incredibly valuable you are for your family. Yeah, it sucks to be the one who finds out the shitty internet info (I know this from personal exp.), but you will find that by being the knowledge-bearer, you will truly lighten the load for your mom. Because you *can* be the knowledge-bearer. It's who you are, and who you are is exactly what everyone needs. And you will -- I promise -- never, ever regret loving him this deeply and this well. It will cause you immeasurable pain, yes, but never regret.

So very sorry. Please be good to yourself. Let others (and so many internet and real-life people love you) be good to you.

Beth

Oh, and I totally agree with you about not selling the house now. I wouldn't be surprised if your mom came to agree with you too.

I'm really fucking sorry. It's not fair that you should have to hurt like this. Being a grown-up and *knowing* shit sucks hairy, poop-covered, donkey balls. I don't really know what else to say, because, well... yeah.

But I guess I do want thank you for sharing with us. We are all here for you. I hope this little message, along with all the others, will help to bolster you as you go through this. I hope that you will find comfort in that, in the fact that so many people care. Because we really fucking do.

What a fucking mess. I'm not part of the situation nor am I a doctor, but it sounds like your dad should really be discouraged from having chemo. Don't let the docs whitewash the side effects, and make them be as specific as possible about both the quality and quantity of life that will result in different scenarios. It sounds like your parents are understandably terrified and grasping at straws and that's OK, but just make sure they get accurate and realistic info from the docs. And keep looking into hospice -- it's an option at any time, and it doesn't mean "giving up," it means comfort and quality of life. Here's a good article in case you haven't yet Googled everything known to man about terminal illness and end-of-life issues: http://tinyurl.com/266xt7w
Good luck.

I don't know if you would find it heartrending or helpful, so feel free to ignore me on this, but Atul Gawande's New Yorker article on end-of-life care is amazingly thoughtful and well-written, as his stuff always is: http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all

It will certainly show you that there is nothing wrong with you -- wanting the suffering to end is an entirely sane and compassionate response, and it's one that our medical culture tends to get in the way of. It might also give you some useful scripts or talking points for further conversations with your mom and dad.

I don't know if you would find it heartrending or helpful, so feel free to ignore me on this, but Atul Gawande's New Yorker article on end-of-life care is amazingly thoughtful and well-written, as his stuff always is: http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all

It will certainly show you that there is nothing wrong with you -- wanting the suffering to end is an entirely sane and compassionate response, and it's one that our medical culture tends to get in the way of. It might also give you some useful scripts or talking points for further conversations with your mom and dad.

So, so sorry for you, your parents, your family. I've had two relatives go through something similar to this, one who opted for chemo, one who didn't. My Uncle did (esophageal cancer) because he needed to get his affairs in order. He was a radiologist and knew it would only give him a little more time. My grandfather refused it and lived almost a year longer than they thought he would (lung cancer, they gave him 6 months tops).

I had a dream about you last night. I dreamt that I flew out to DC to help you. I cleaned your house and played with Noah and Ez and listened to you cry.

We all wish we could do that for you. All your readers who love you so much, we want to be there to bolster and comfort and help you in person. We know we can't, but we want you to know that the internets are loving you as fiercely as we possibly can.

Hi Amalah,
my mom died last year. of ALS which they affectionately call a "wasting disease" as in you just waste away...three years earlier i called her doc and told him she was acting strange. he laughed at me. i told HER she was acting strange, and SHE laughed at me, then i told my dad, a doctor and he said "andi, what if she DOES have a brain tumor, would you lobotomize mom?" (of course i would, she was only 50!). so after tons and tons of google-madness my dad called and told me the bad news and i hated myself...truly hated myself for being right all along...

i stayed with her for the last 3 months of her life and while i hated every minute of it? i wouldn't change it for the world. if you have the option to go and be with your dad? you should do it. take the boys and just go live there. your mom will love having them around and you'll get all that last-minute time you need. and if it turns out to be longer than 3 or 6 or 9 months? just stay there...in the grand scheme of your entire life, that isn't very long and you can't undo it once you've not been there enough.

please take care of you during this whole insane period in your life. get a mani/pedi and blubber the entire thing to the sweet asian girl doing them...she can't really understand but they are so sweet with the nodding and smiling. have an extra brownie or five, aw hell, eat the whole pan...you can work it off later.

i think of those last three months with mom and i remember them with a smile though it was the most horrific time in my life.